Nine Hearts

This is D's backyard, where I do laundry.

I have an appointment for surgery in May. I've had it for a couple of weeks. One thing about having a surgeon like this is that his schedule is booked a ways out. (I share about him in the previous post, Tether.) During the time between his already-booked operations, he is teaching in China, New York, and Chicago. So I am waiting. And although waiting makes things even harder financially, I am also grateful to wait. It is letting me catch up on sleep, and take walks outside, and recover some strength and energy after what was a very stressful time, and before the challenge of surgery.

I haven't wanted to write much in the blog since getting to LA. I value this narrative, and plan to continue it. And there are some worthy things within this time too, which I hope to share soon. But as the days are coming, I feel like I would rather be with myself in them, than try to describe things.

I'm still messing around with social media every day. It's a way to feel connected to people I am far from. And I love spending time with close friends, or getting to talk with friends or family on the phone. That is the best. I want to feel loved and to give love right now. I will probably share the surgery date on facebook closer to the time, to ask for love and good energy.

I just had strep for a week. That sucked. Oh and here's something else. While I was walking last week, I saw this playing card on three different days, in three different parts of the neighborhood (the wind, dontcha know). And each time I saw it I wondered if I should, kind of, get something from it. I wondered if playing cards have meanings attributed to them like tarot cards do. On the fourth day, I found it had blown up onto my very own door step, so I took this photo and looked up the 9 of Hearts meaning online, and that was nice.



Lots of love.

Tether

There are familiar feelings of home and comfort in the sound of water draining from a bathtub. After four months of mostly alone travel it is nice to have those feelings. I listen while I'm standing on a grey cloth shag bathmat. My toenails are dark turquoise, hand-painted by a seven year old who is one of my favorite people in the world.

I am in Los Angeles, tired to the bone. I'm staying in a cheap, airy little studio where I'm catching up on sleep. I brought myself here after staying with some of my oldest, dearest friends for a few nights. Their house was the best place in the world to be, filled with so much love and home. But there was construction going on next door, and after 3 more days on the train, the anticipation of early a.m. drilling and pounding had me lying awake in a pool of adrenaline all night. Nearing two weeks without sleep, I rented this cheap little place for a week. It is quiet here, and I am sleeping for the first time in weeks. Every morning I open the curtains to look out over Silverlake's hills and missions and palmtrees. Thick-branched magnolia and avocado trees frame a view of houses and churches scattered over green hills that run up into the foothills of mountains. In recent days it has been misty and raining. Everything out my window looks like my imagination of Mexico.  

I am also walking distance from the friends I'd been staying with, which is important because they feel like my anchor here. Lacking a sense of true north in LA, all my geographical understanding is oriented around their house. Another very dear friend is near them too. And others have been appearing slowly-- some with phone calls and some completely by coincidence on street corners when I am taking the advised daily walk-- and it is really nice to be myself in a place with loving, familiar people. 

I am in Los Angeles because I found my surgeon. An excellent human being who is great at what he does, and treats me with kindness and respect. He has told me three things.

1. It is not true that I "don't need" the healthy organs that other surgeons told me I didn't need. It is true that we should leave them in the body, and that they are necessary in ways that science both understands, and doesn't understand yet. 

2. It is not true, like other surgeons have told me, that those healthy organs have to be removed in order to treat the insulinoma. There is a more difficult, more delicate procedure that attempts to remove it without just chopping out big things. He told me surgeons say organ removal is the only way because they either can't do the more difficult procedure, or they know how, but are not willing to make the extra effort. 

3. He performs the more complex procedure as a matter of course. Not because I have asked him to, but because it is his standard practice to go to such lengths in order to let people keep their bodies. He doesn't see organs as discardable for his convenience. He practices this way as the head of surgery at his hospital.

I also like him. He is joyful. And warm. And human. And his "main passion besides surgery" is going to see theater. When we first spoke on the phone, he said excitedly that he would have loved to have met me in Chicago (thinking I was there) when he was there last week, seeing a show at Theater Wit! He smiles at me with the same kindness that you and I smile at each other with. He said he wished he had known I was trying to contact him when I first started trying 3 weeks ago (before the hospital gatekeepers would consent to let me ask him a question from out of town). He said he was glad I kept searching, and congratulated me for not giving up. 

So after 4 months of looking, traveling, waiting, persisting, listening, asking, hoping, giving up, shutting down, trying again, and being treated with irritation and condescension by surgeons for saying these words, "I am looking for a way to remove the insulinoma without removing my organs, if I can. Do you know of a way to do that?" I found my person. The searching part is over.

Fully involved in that process, I hadn't really had the head room to consider that the next part of this would be harder. The surgery was described to me the other day, and it is a major one. Even with this skillful person performing it, surgery on this delicate, "fussy", centrally located organ holds significant risks, including organ loss, damage to vital arteries and ducts and life long consequences. It also holds a higher than usual risk of death. If all goes well, the recovery process will be 4-6 weeks. 

After explaining everything to me, he encouraged me to go away and think about it, because it is my decision. I appreciated this so much. His recognition that all of this is my choice, and that I am not under anyone else's authority.  After all this traveling and searching, I am surprised by how unprepared I feel to reckon with this. But I guess my time has been filled with the effort of the search. This is the first time I've been free of the effort and the stress of that, and am just facing the procedure. It was good to have his blessing to take the decision seriously, and not be pressured or rushed. I am sitting with it this weekend. I just wanted to share with you guys who supported me that the searching part is finally over. Hallelujah. 

*

Sometimes my phone sends me texts. From myself, to myself. I have my own number saved in my phone as "me", because I text myself occasionally with things like phone numbers or addresses, blazing insights, or the name of my landlord to remind me to send in my rent check. I use it as a note pad and calendar. But sometimes my phone does this by itself. It writes and sends a text message to me from me. Usually the messages are digital gibberish. Like this one from July 7 of 2015: 

"D#(cent sign)@(cent sign)3D R'sqqq11q a a q2 was q was q Wasa's waters aaw a qqq Wawa's qq1 was was q was a was qaaq Wawa's aaaaaaa"

You can tell that's my butt writing me a message from my pocket. But it's still impressive to me somehow, that the mistake takes the form of a message composed and sent and received. I also think it's cute. 

But then sometimes my phone sends me messages that seem very coherent. I've only ever gotten three like this, and I kind of cherish them. They are probably the same kind of thing; my phone activating itself in my pocket or on a table, and then maybe turning on the voice to text feature and recording some bit of surrounding conversation?... and then sending it to me. My phone sent this text to me on Dec 3 2015:

"She does so many interpretively dances already"

This one is from Sept 5 2015:

"And all of Janna's friends are like artists so they're kind and lovely  and you're like who is this who has found their way here"

I got one last night, April 8th, while I was staring out the window trying to have a mental conversation with God, or with my self, or with whatever it is that knows what to do. Going in to a physical trauma like this, I am looking for some feeling of resolve or positivity or life-will. I'd like to have a feeling of hope or a wish to be here to bring me into and through the pain and injury and recovery. I'm asking and listening for any part of me that feels like going through surgery is worth it. I want to find a will or a wish to live through and past this. I haven't been able to find that yet. This message came while my phone was on the other side of the room from me. It said

"Saint I miss you and I finally tether" 

I don't know what that means. But it was nice to be sent a message at that moment, and to have something to muse about. 

I think that's it. I don't have anything else to share right now.